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In the Suburbs / Sharing the pain. How much personal information is too much?

Steven Gaynes| on January 27, 2014

I read with great interest a piece in Tuesday's Connecticut Post about how a Darien woman with stage 4 breast cancer is tweeting, along with her husband, about her battle with the disease.

The piece raised some interesting questions, I thought, about how appropriate is to share the details of such a battle so publicly. She told the Post that the tweets are a way for her to leave her family a legacy. But she also is being criticized for it.

I salute this woman for her courage and empathize with her frustration over the criticism. Early in my tenure as a columnist, I weighed the potential for similar criticism before writing about the importance of being one's own advocate for medications being dispensed. I took the risk anyway.

The piece was a reflection on the months following my wife's brain aneurysm in 1986. Concerned about possible seizures, her primary physician prescribed Phenobarbitol, an anti-seizure drug with a bizarre side effect -- clinical depression.

He had first prescribed Dilantin, another powerful anti-seizure medication, but it caused a rash.

I was blatantly honest in the piece. Once my wife was home from the hospital, the Phenobarbitol caused such severe depression that I was finding suicide notes around the house. I contacted the physician and angrily demanded he prescribe something less depressive. At first, he refused, but when I mentioned the suicide notes, he acted immediately.

The doctor prescribed Tegretol, a mood-stabilizing drug often used to treat depression or bi-polar disorder.

The change couldn't have happened fast enough. We were going away to a friend's ski lodge that weekend, and my wife was still feeling depressed and didn't want to go. At first, she was unhappy that I had hijacked her medication regimen, but she reluctantly accepted the change. Within 24 hours, she had done a complete turnaround, the depression was gone and we had an upbeat and wonderful weekend.

When the column was published, I was flooded with letters (no emails in those days), most agreeing with the importance of becoming a medication advocate. But a few letters said that I was too candid and shared too much of our private lives.

My wife was not thrilled with the column either, because she thought I had shared way too much information. But when I showed her some of the letters, she softened. At the time, I was also not showing her my early drafts of the column. But after the medications column ran, I started showing her all column drafts. She's changed very little over the past 25 years.

The woman from Darien opened up completely on Twitter, sharing good days, bad days and pain. And I know how difficult that reality can be for cancer survivors or families of those whose loved ones didn't survive. But I've learned over many years of writing essays and attending valuable writers' conferences that journalists who reached into their gut to tell painful stories evoked strong reactions from their readers.

Many followers of tweets by this woman and her husband were generally positive, and many shared stories of their own, according to the Post.

Over the years, I have written many other columns on difficult topics to which I have some personal connection -- tough love, domestic violence, addiction and bullying, among others.

Those kinds of columns almost always have been followed by letters or emails from readers who felt they could finally share their own stories in private messages. And I have treasured those responses. I received a lot of inspiration over the years from journalist and author Anna Quindlen, whose columns about the life challenges confronting us everyday ran every Thursday in The New York Times. When I was commuting to New York City, I read them faithfully on the train and often was moved to tears because Quindlen's writing about tough subjects was so real and honest.

I hope the lady from Darien continues her legacy of tweets. She and her husband deserve to chronicle her battle with breast cancer and finish the story, no matter how graphic.

Steven Gaynes is a Fairfield writer, and his "In the Suburbs" appears each Friday. He can be reached at: steven.gaynes@yahoo.com.